Young Kaysa Beausoleil has weathered her latest medical crisis; she's now back home with her family, where she belongs, much to her mother's delight.

This is Kaylee. Kaylee Beausoleil. I hope this finds you well.

I am doing much better now: our little Kaysa is back home; she's out of the hospital! I couldn't be more happier than I am at the current time!

Having Kaysa in the hospital is probably the worst thing about her disease (Niemann-Pick disease); you never know when she is going to fall ill. One minute she can be fine, playing, running around, chasing her siblings (or the cat); the next--*BOOM* She ends up in the hospital--AGAIN.

When she is well, however, Kaysa is a very loving, sweet child with a quiet, demure personality that I find charming. She has long, long strawberry blonde lashes that match her luxurious, long strawberry blonde hair and huge, grey eyes, and she loves to bat her eyes at any cute boys she may happen to catch sight of.

There's nothing really shy about Kaysa; however, she is usually tethered to an oxygen tank, and she is in her stroller; she can walk, but she tires easily, so she rides her stroller. People know from looking at her that she is ill; it makes them (and me) sad. They don't know how to react when they see her; it's a common occurance.

I sometimes wish people'd learn to see past her oxygen tubing or her pale complexion; she's a child with dreams, desires, and she deserves to be treated as such. When people pity her (or me), it makes me angry; they treat her like she has AIDS or leprosy. She may have a fatal disease that's beyond her fault, but my daughter is a person first, and she deserves to be treated with respect, dignity!

Pity is the last thing Kaysa (or I) need right now! What we really need is understanding and patience!!

Now that I have that off my chest, I feel a lot better. It's just something that's been building up for a long time; and I had to let it out.

Well, the kids are up, so I'd best go now. I will write in here another time; until then, take care and God bless! Continue to keep us in your prayers; we can really use them, especially when Kaysa is sick and/or is in the hospital again! Thanks a lot!

Excellant write but I think the mother is wrong not to understand why people pity this child. It is a natural instinct in humans and especially in other parents to pity and feel comapssion for children when we see they are sick or suffering and you cannot change basic instincts easily.

Your story shows there are lots of feelings involved surrounding a disabled persons. I think people probably understand and sympathize, but they just don't quite know how to show it without seeming patronizing. Well written, Karen.

It's always the same with a handicapped person..people stare. Maybe they don't mean to, or maybe they're just curious. Anyway, it hurts the caretaker and especially the one with the handicap. You've captured this unfortunate way of our society brilliantly.